CFS & IBS?

[sming]

Hi,

I'd really appreciate some guidance since I'm new to CFS. In a nutshell I've suffered from depression and IBS for many years but also extreme daily exhaustion that intensifies and diminishes, seemingly every few weeks.

I've always attributed the exhaustion to my meds (anti-depressants etc.) but it's never made sense that it varies so much when I haven't been varying dosages. I also didn't appreciate how the exhaustion hit me (like a sledgehammer) after playing soccer. During soccer I'd feel weak and leaden. After soccer (and the next day) my IBS pain would worsen too typically.

In addition to this I have the below symptoms (I copied the ones I experience from the CFS wikipedia page).

Anyway, it seems like there's some confusion over the relationship between CFS and IBS. For example, some resources say "exclude IBS" when diagnosing CFS, which implies you can't have CFS if you have IBS. However other resources list IBS (and its pain) as a symptom of CFS, implying you can definitely have both.

So do I have CFS? If so, do I have IBS and CFS or IBS because of CFS?

Many thanks for reading,
Pete

Symptoms
--------------------------------------

• flu-like feeling
• several months of severe adverse stress
• severe fatigue for six consecutive months or greater duration which is unrelated to exertion, is not substantially relieved by rest, and is not a result of other medical conditions
• The fatigue causes a significant reduction of previous activity levels.
• impaired memory or concentration
• post-exertional malaise, where physical or mental exertions bring on "extreme, prolonged exhaustion and sickness"
• unrefreshing sleep
• irritable bowel syndrome-like symptoms such as bloating, stomach pain, constipation, diarrhoea and nausea
• visual disturbances (sensitivity to light, blurring)
• depression or mood problems (irritability, mood swings, anxiety, panic attacks)
• work, school, and family activities are significantly reduced for extended periods of time
• strongly disabling chronic pain
• always feel worse when running/playing soccer
• feel worse in the hours after running/soccer
• feel worse the day after (and probably after that)

 

[Daffodil]

hi sming. just wondering if these symptoms started after some sort of infection or was it gradual?

sounds like it could be CFS to me, at the early stages

 

[sming]

Hi Daff, unknown. In a nutshell I was super-healthy until the age of 21, when the following happened in the space of a few months:

• Bilateral compartment syndrome
• Hydronephrosis (right kidney)
• Depression, anxiety, OCD
• IBS (I think it started at this point but I'm not 100%)

As you can see, 21 was not a good age for me...

If/when the CFS symptoms started it's really tricky to say (this is all the best part of 20 years ago - gulp).

 

[minkeygirl]

I'm not aware that IBS is even included in the definition. I also don't think playing soccer can cause IBS to worsen as IBS is usually affected by diet. Have you been diagnosed or is that just what you think?

I have IBS-C which came out of the blue in 2010 after I'd been sick for 15 yrs. I had a colonoscopy to rule out other things and IBS was my diagnosis because nothing else was wrong. IBS is just one of those "fun" things that we tend to be susceptible too, like TMJ.

I don't think there is any way to know if which came first or if one caused the other although I'm not aware of IBS causing CFS.

I manage mine with diet and acacia fiber. It really has no impact in how it affects my ME.

 

[sming]

it's under the "other symptoms" section most frequently AFAICT e.g. http://www.cdc.gov/cfs/symptoms/index.html.

Actually diet affects IBS but it's just one of many factors. Many people report FODMAP diets helpful to some extent but there's many like myself for whom FODMAP does nothing. I've done every IBS diet under the sun and found zero relief. To answer your question yes, I was diagnosed IBS-C too many years ago and have seen many health professionals, again with zero relief. I think the GI faculty at Mount Sinai collectively groans when I make an appointment heh heh.

Exercise helping IBS has largely been debunked and statistically (yes, I'm tragic and I keep a spreadsheet...) I'm worse after soccer for a day or two.

I used Healther's acacia fibre for a long time but (I'm sounding like a stuck record here) got zero relief.

It's the cyclical nature of it that kills me. One week I'm in a pit of despair, suicidal and the next I'm 80% OK pretty much. Drives me crazy (no pun intended).

 

[minkeygirl]

I'm lucky, in that I do fine as long as I take the acacia fiber and don't screw up my diet. I just ate some popcorn with melted butter (BIG MISTAKE) so I'll pay tomorrow but oh well.

 

[sming]

wow no way, me too - popcorn is one of the foods that is guaranteed to cripple me. I wonder why that is (it's high in fibre but low in FODMAP). I hope tomorrow isn't so bad for you.

 

[minkeygirl]

The butter is probably worse for me. I don't care. I have discovered Fleet liquid glycerin suppositories so if I'm too miserable I have that. If I want something I eat it. Hell with my ibs

 

[Hip]

For example, some resources say "exclude IBS" when diagnosing CFS, which implies you can't have CFS if you have IBS. However other resources list IBS (and its pain) as a symptom of CFS, implying you can definitely have both.

I am not quite sure what the CDC mean by "irritable bowel" in their definition of CFS. There is no such medical condition as irritable bowel, but there is a medical condition called irritable bowel syndrome (IBS).

For the symptoms and diagnosis of ME/CFS, you may be better off looking at the Canadian Consensus Definition of ME/CFS rather than the CDC definition. The Canadian is more scientific.


IBS and ME/CFS are independent conditions, and you can have either on their own, or both together.

However, although IBS is not part of ME/CFS, there is a high statistical prevalence of IBS in ME/CFS patients (ie, IBS is a common comorbidity of ME/CFS). Studies of IBS among patients with chronic fatigue syndrome have reported a prevalence ranging from 35-92%.†

Note that IBS can be caused by the intestinal protozoan parasites Giardia lamblia, Blastocystis hominis and Dientamoeba fragilis, all of which are treatable. There is also evidence of bacterial infection in IBS (in that the antibiotic rifaximin can put IBS into remission for several months).

For Giardia lamblia, a single dose of antiprotozoal drug tinidazole is an effective treatment.† For Blastocystis hominis and Dientamoeba fragilis treatment: see the triple drug cocktail (comprising secnidazole, diloxanide furoate and bactrim DS) at the Badbugs website. A two week course of rifaximin, a unique antibiotic which is not absorbed in the intestines (and so remains in the bowels), improves IBS symptoms for three months.†

 

[WillowJ]

My IBS is often worse after activity (such as going to the doctor, as I'm housebound).

welcome to the forums.

 

[zzz]

Note that IBS can be caused by the intestinal protozoan parasites Giardia lamblia, Blastocystis hominis and Dientamoeba fragilis, all of which are treatable. There is also evidence of bacterial infection in IBS (in that the antibiotic rifaximin can put IBS into remission for several months).

For Giardia lamblia, a single dose of antiprotozoal drug tinidazole is an effective treatment.†

This is true for healthy people, but for people with ME, this may not be sufficient. I found this out the hard way.

I had giardia a number of times when I was living in South Asia, and each time had it cleared up by antibiotics. Giardia is known to be a major risk factor for ME/CFS, and is the only pathogen known to be able to cause outbreaks of ME/CFS.

I came down with ME four months after returning from South Asia. I later noticed that a fair number of people I knew who had lived in South Asia (where just about all Westerners get giardia if they stay long enough) eventually came down with ME/CFS.

Sixteen years later, the symptoms of giardia started coming back. My doctor, of course, thought that this could not possibly be giardia, but he agreed to give me a single dose of tinidazole. Within a few hours all my giardia symptoms were gone, as well as several unrelated ME/CFS symptoms.

One day later, they all came back. My doctor agreed to give me a three-day course of tinidazole, but this time it did almost nothing. I did some research, and found the paper Treatment of Patients with Refractory Giardiasis. However, my doctor wanted to do some tests before giving me any more antibiotics. The tests, of course, came back negative.

He then sent me to the infectious disease specialist here, who was not impressed by the fact that the first tinidazole dose worked, nor by the paper I had found. He diagnosed me with IBS. My doctor concurred.

Meanwhile, my symptoms were getting worse, and I started suffering extreme pain. Sometimes it had the exact symptoms of a gall bladder attack, but my gut was always involved as well. Since I had been diagnosed with IBS, my doctor washed his hands of me.

As things were getting progressively worse, I decided to follow one of the protocols mentioned in the paper for refractory giardiasis. I ordered enough tinidazole and albendazole off the Internet for the recommended ten-day course. Sure enough, I started improving after a couple of days, and was completely over the "IBS" long before the ten days were up.

Unfortunately, my symptoms started coming back a few days after that, though not as bad. I decided I needed a better doctor, so I ended up with the one described in this post, as he was considered to be one of the best internists in town. He saw that the antibiotics were working for me, and as a result, continued to prescribe them, although I had to change the tinidazole to azithromycin when I started developing peripheral neuropathy from the tinidazole (which fortunately went away quickly). I was on antibiotics for a year and a half, and then was gradually able to come off them, and with my current regiment, my gut is fine.

My experience says several things to me. First of all, I never had IBS. IBS is very well defined, and I never met its definition, despite what the two doctors said. I have noticed that often IBS is used as a "wastebasket diagnosis" when doctors just have no idea what's wrong with your gut, but don't want to admit it.

Second, I can't claim for sure that my symptoms were a resurgence of giardia, although I noticed a post recently on this site from someone who had an extremely similar experience with giardia and used the same combination of antibiotics to clear it up.

Third, my experience seems to support the "hidden infections" theory - that we have a number of low-grade infections that our immune system just can't quite clear up. I really wonder about IBS - another "syndrome". It's certainly very real, but no one knows what it is. It manifests in a wide variety of ways. Could at least some cases of IBS just be the manifestation of any number of pathogens that aren't easily detected? There are certainly other mechanisms that could explain IBS, but I don't think there's been enough evidence to rule out the pathogen theory for all cases of IBS. The doctors will say, "Your tests all came out negative", yet that's what they said to me, and antibiotics cleared up my condition.

 

[sming]

I am not quite sure what the CDC mean by "irritable bowel" in their definition of CFS. There is no such medical condition as irritable bowel, but there is a medical condition called irritable bowel syndrome (IBS).

For the symptoms and diagnosis of ME/CFS, you may be better off looking at the Canadian Consensus Definition of ME/CFS rather than the CDC definition. The Canadian is more scientific.

thanks for the info. Well according to that definition I do have CFS. The only symptom category I don't have at all is IMMUNE MANIFESTATIONS.

IBS and ME/CFS are independent conditions, and you can have either on their own, or both together.

However, although IBS is not part of ME/CFS, there is a high statistical prevalence of IBS in ME/CFS patients (ie, IBS is a common comorbidity of ME/CFS). Studies of IBS among patients with chronic fatigue syndrome have reported a prevalence ranging from 35-92%.†

so it sounds like I'm in a popular boat - attendance-wise at least.

Note that IBS can be caused by the intestinal protozoan parasites Giardia lamblia, Blastocystis hominis and Dientamoeba fragilis, all of which are treatable. There is also evidence of bacterial infection in IBS (in that the antibiotic rifaximin can put IBS into remission for several months).

For Giardia lamblia, a single dose of antiprotozoal drug tinidazole is an effective treatment.† For Blastocystis hominis and Dientamoeba fragilis treatment: see the triple drug cocktail (comprising secnidazole, diloxanide furoate and bactrim DS) at the Badbugs website. A two week course of rifaximin, a unique antibiotic which is not absorbed in the intestines (and so remains in the bowels), improves IBS symptoms for three months.†

I've tried rifaximin twice to no avail but haven't heard of the other conditions. I'll ask my GI doc at Mount Sinai (which is apparently quite good for GI). Thanks again for the info.

 

[sming]

My experience says several things to me. First of all, I never had IBS. IBS is very well defined, and I never met its definition, despite what the two doctors said. I have noticed that often IBS is used as a "wastebasket diagnosis" when doctors just have no idea what's wrong with your gut, but don't want to admit it.

Interesting story, it really sounds like you've been round the houses with your condition(s). IBS seems these days to be diagnosed with a mix of Rome III and exclusive diagnosis http://www.aboutibs.org/site/signs-symptoms/diagnosis. I tick all the boxes (and not the exclusionary boxes).

I really wonder about IBS - another "syndrome". It's certainly very real, but no one knows what it is. It manifests in a wide variety of ways. Could at least some cases of IBS just be the manifestation of any number of pathogens that aren't easily detected? There are certainly other mechanisms that could explain IBS, but I don't think there's been enough evidence to rule out the pathogen theory for all cases of IBS. The doctors will say, "Your tests all came out negative", yet that's what they said to me, and antibiotics cleared up my condition.

For me, any professional (or otherwise) who tells me "IBS is caused by X" is just wrong. There's anecdotal proof (like your experience) but unfortunately it's always idiosyncratic and doesn't help most other IBS sufferers. If I had a buck for every time someone's told me that the FODMAP diet cures IBS... I'd have $62

 

[Hip]

Just in case this helps anyone, for my IBS-D, the supplements I found helped the most, in approximate order of effectiveness, are:

(1) Fennel essential oil, 5 drops diluted in15 ml or more of a carrier oil (such as olive oil) and taken internally. Fennel essential oil not only makes dramatic improvements to my IBS in a matter of days, but also, even after I stop taking fennel oil, these improvements are maintained for a good two weeks, before my IBS starts to return again. But if I keep taking fennel oil daily, my IBS is near enough in full remission. Anethole makes up 70% of fennel essential oil, and I suspect anethole is the ingredient with the anti-IBS properties. Anethole has potent antimicrobial properties, against bacteria, yeast, and fungi, and anethole inhibits TNF-induced cellular responses, which may explain its role in suppression of inflammation.†

(2) Chyawanprash (an ayurvedic herbal mixture).

(3) Vanadyl sulfate 5 mg

(4) Triphala (an ayurvedic herbal mixture).

Drugs like Imodium (loperamide) are also quite good.

 

[sming]

Hi Hip, "taken internally" you mean swallowed and not for example up one's bottom, to put no finer point on it.

 

[Hip]

Hi Hip, "taken internally" you mean swallowed and not for example up one's bottom, to put no finer point on it.

Yes, I mean fennel essential oil should be taken orally by mouth. Note that essential oils should always be diluted in a carrier oil such as a cooking oil, because they are too strong to take pure.

The internal use of essential oils is a sometimes a controversial area, but fennel essential oil is on the FDA list of essential oils generally regarded as safe.

The main ingredient of fennel essential oil which I think provides the therapeutic effect for IBS is anethole. Fennel essential oil contains around 70% anethole. Anethole gives the characteristic flavor to the alcoholic drinks sambuca, ouzo, pastis, and Pernod.

Note: fennel essential oil, like many other essential oils, also contains small quantities (2.5%) of estragole (aka: methyl chavicol), which is a potential carcinogen. However, analysis suggest that there is no significant risk from estragole in herbal products used for short periods of time: "it is concluded that the present exposure to estragole resulting from consumption of herbal medicinal products (short time use in adults at recommended posology) does not pose a significant cancer risk."

So fennel essential oil appears to be safe for short term use. Though for long term use, it may be safe to take pure anethole rather than fennel oil. You can buy pure anethole here.

 

[physicsstudent13]

I had terrible crippling nausea that was falsely diagnosed as IBS. I took 2 weeks of albendazole/pyrantel and it cured me.
Now I'm on tinidazole and doxycycline for a week for mycoplasma infection. You have to take the tinidazole with a meal because it is really hard on the GI